ClobberBlog | Mormonism, Evangelical Christianity

Meet my daughter, Harley. The picture on the left was taken a few minutes after she was born on June 28, 2006, when Harley was 19.5″ long and weighed 7 lbs. 4 oz. The picture on the right was taken a few days ago. Harley is now two years old, 36″ tall and weighs 30 lbs. She looks like a pretty normal two year-old, but Harley has a genetic disorder called Velo-Cardio-Facial Syndrome, sometimes known as 22q11.2 Deletion Syndrome or DiGeorge Syndrome / Sequence. In layman’s terms, it means she’s missing bits of genetic material from her 22nd chromosome.

Let me back up a little bit. My pregnancy was uneventful. I did a blood test while I was pregnant to check for some common disorders like Down Syndrome, but it came back negative and would not have picked up Harley’s condition anyways. An amniocentesis would have, but I was only 23-turning-24 with no real history of genetic problems in my family, so there was little reason to do one. The labor and delivery were pretty normal with no real crises.

When Harley was out, I saw the nurse point to her out of the corner of my eye and heard her say softly, “She’s got a hernia.” The doctor shh’ed her, but already I was worried. The nurse whisked her away for her Apgars then brought her back to me. She had scored an 8 on her first Apgar and a 9 on the second. “She’s got a little umbilical hernia, but other than that you have a healthy baby,” she told me as she laid her in my arms. They quickly explained that the hernia was fixable and was not a serious health problem.

Now, I know that when the hospital staff puts your firstborn child in your arms for the first time, you’re supposed to remark how beautiful she is or start crying or smile or something like that, but I couldn’t shake the feeling that something was wrong with my baby’s face. This very disconcerting thought that Harley had a cleft palate came into my head, and I couldn’t push it away. It can’t be, they’d have caught it, I thought to myself. I felt dumb for saying it, but I blurted it out anyways: “Does my baby have a cleft palate?” The nurse and doctor both looked surprised, and the nurse took Harley back to check her palate.

It turned out that Harley had a partial soft cleft palate, a very small one at the very back of her mouth. Within the next few hours I was being assured that it was the most minor form of cleft palate possible. However, it still meant that Harley had no suction, could not breastfeed and would have to be fed with the aid of special bottles. And it turned out the little umbilical hernia was not so little at all; it was more like a gigantic double umbilical hernia. They could tell Harley would need a surgery for the hernia and a surgery for the palate within the first two years of her life.

Something else was different about Harley though. She did not look like other babies. Apart from the cleftish features of her lips and chin, Harley had a very pronounced nose and very long fingers and toes. Almost everyone who saw her remarked on how unusual this was. We did not think anything of it though; I thought these features made her quite beautiful in comparison to all the newborns out there with chubby digits and flat, wide noses. As far as we knew, we had a baby with a cleft palate and a hernia who was otherwise normal and healthy.

There was a geneticist from Salt Lake City visiting our hospital in Provo on the day Harley was to be discharged, so our pediatrician made arrangements for us to see her. He had his suspicions about Harley’s symptoms, and by this point an awful lot of people were asking me about Harley’s heart scan (which had come back normal). We met with the geneticist, who examined Harley’s fingers and toes thoughtfully for a few minutes while talking about her other problems and asking about our family health history. Finally, she told us she thought Harley could have a condition called 22q11.2 Deletion Syndrome, and said that they would need to do a blood test to be sure. A little less than 2 weeks later, the geneticist called me to confirm that the test for 22q11.2 Deletion Syndrome had come back positive. Since then I’ve come to accept “Velo-Cardio-Facial Syndrome” (VCFS) as the best name for it.

It’s difficult to describe the range of emotions you go through as a parent when the doctors tell you there is something wrong with your child. I cried and I prayed. I blamed myself for giving her faulty genes even though I knew that was ridiculous. I worried about Harley’s future and whether or not she had a chance at a normal life. I wanted a daughter who would always be ahead in school subjects and win writing contests and scholarships as I had, not a daughter who would be lucky if she avoided a life of bouncing from one special education program to another. I felt all those hopes and dreams slipping away.

With all the fear and doubt filling my mind, there was one thought that kept me going: the same God who had made me made my daughter. God made Harley just the way He wanted her, and God doesn’t make mistakes. He has a perfect plan for her life and a place for her in this world just like He does for me. I think it’s wrong for those of us who are parents of children with special needs to compare our sons and daughters to the “perfect” children out there. Our children are perfect, created in God’s image just as we were. It’s the rest of the world that’s screwed up. God doesn’t think our children are defective; why should we?

Harley’s story will continue, and the good news is, so far she seems to be at the high functioning end of the VCFS spectrum. Right now it looks like there’s a good chance that with continued intervention as she grows, she will lead a normal life as an adult and no one will ever know she has it. But even if she does not, and always needs the assistance of others to survive, that’s okay. My child is still perfect.